Cancer Registration

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• Cancer Registration
• and Cancer Control in Asia

IACR Workshop Beijing 16th Sept. 2004
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THE POPULATION BASED CANCER REGISTRY IS THE
INDISPENSIBLE FOUNDATION OF A SURVEILLANCE
SYSTEM
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A cancer surveillance programme exists to
    To assess the current magnitude of the
cancer burden and its likely future evolution
        To provide a basis for research on
cancer causes and prevention
        To provide information on prevalence and
trends in risk factors,
        To monitor the effects of early
detection, screening, treatment, and palliative
care.
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PURPOSES AND USES OF CANCER REGISTRATION
1 Epidemiological Research Descriptive
Epidemiology Analytic Epidemiology 2 Health
Care Planning and Monitoring Patient
Care Survival Screening Prevention
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EPIDEMIOLOGY
1 Descriptive The information on exposure
comes from routine sources (registers,
records, surveys...) The variables are
non-specific (indirect link to causes) 2 Analyt
ic Information on exposure is collected from
individual subjects Association between risk
factors possible causes and disease
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Cervix Uteri, Incidence Rates by Education Level,
Quito Residents. 1985-1999
Cancer in Ecuadorian regions 1997-1999 NCR, Solca
Quito, 2001
Source N.T.R.
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Cancer in Scotland 1975-1980 Large Bowel, Females
IARC Scientific Publications No. 72, 1985
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Trends in Colon Cancer Incidence ASIA Age
Standardised Rate (World), MALES
Singapore Chinese
Hong Kong
Osaka
Manila
Bombay
. . ..
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PURPOSES AND USES OF CANCER REGISTRATION
1 Epidemiological Research Descriptive
Epidemiology Analytic Epidemiology
2 Health Care Planning and Monitoring Patient
Care Survival Screening Prevention
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USES OF CANCER REGISTRY

• PLANNING EVALUATION OF CCPs
• I DEFINING THE PROBLEM
• Burden of cancer
• Past trends
• Future projections

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• Burden of cancer
• as number of new cases
• Priority for cancer control (prevention,
  treatment)
• Estimating the resources required, based on
  numbers of new cases ( by age, stage, etc)

CANCER INCIDENCE
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(No Transcript)
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CERVIX
BREAST
urban
rural
rural
urban
MORTALITY TRENDS CHINA 1987-1999
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Estimates and projections of national cancer
incidence mortality
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PLANNING EVALUATION OF CCP MONITORING CANCER
CONTROL
1 Primary prevention Time trends ?
Control areas?
2 Screening early detection

• Outcomes (incidence or mortality)

• Time trend studies (in relation to inputs)

• Linkage with screening programme records
• (distinguish screened/unscreened
  individuals)

• Intermediate endpoints
• Size and stage of screen-detected cases
• Incidence of interval cancers
• Incidence of advanced cancers

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PLANNING EVALUATION OF CCP MONITORING CANCER
CONTROL
1 Primary prevention Time trends ?
Control areas? 2 Screening early detection
Outcomes (incidence or mortality) Time
trend studies (in relation to inputs)
Linkage with screening programme records
(distinguish screened/unscreened individuals)
Intermediate endpoints Incidence of interval
cancers Size and stage of
screen-detected cases Incidence of
advanced cancers 3 Treatment Study of
SURVIVAL 4 Cancer care
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EVALUATION OF CANCER CONTROL PROGRAMMES
SURVIVAL DATA Effectiveness of Treatment in
delaying/preventing death BUT, consider
other factors influencing survival
especially earlier diagnosis
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FACTORS INFLUENCING SURVIVAL FROM CANCER

• Disease
• Natural history
• Clinical extent
• Definitions

Treatment Availability Access Quality
Host Age Sex SES Comorbidity Behaviour
Early Detection Early clinical detection
Screening
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Trends in 5-Year Relative Survival from Selected
Cancers in Women, Singapore, 1968-92
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PLANNING EVALUATION OF CCP MONITORING CANCER
CONTROL
1 Primary prevention Time trends ?
Control areas? 2 Screening early detection
Outcomes (incidence or mortality) Time
trend studies (in relation to inputs)
Linkage with screening programme records
(distinguish screened/unscreened individuals)
Intermediate endpoints Incidence of interval
cancers Size and stage of
screen-detected cases Incidence of
advanced cancers 3 Treatment Study of
SURVIVAL 4 Cancer care
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EVALUATING CLINICAL CARE IN CCP Patterns of
clinical care

• Place of treatment

• Percent treated by specialists

• Percent of cases with adequate staging

• Percentage on treatment protocols

• Delay (diagnosis-treatment)

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• Why do we need cancer registries

• Current situation in Asia

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ASIA 12 COUNTRIES REPRESENTED
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India 9 registries
INDIA 9 registries
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South-East Asia
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Japan and Korea
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China 10 registries
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CI5 incidence data population coverage, 1995
26.2
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12.7
4.7
1
3
82
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INTERNATIONAL ASSOCIATION OF CANCER
REGISTRIES Membership
458
447
402
385
366
191
134
92 ASIAN MEMBERS
91
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Incidence data population coverage, around
1995
36.5
99
19.6
7
8
10.5
86
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• Why do we need cancer registries
• Current situation in Asia
• Whats new?

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GULF STATES 6 population-based registries
Now joined by Yemen The Aden Cancer Registry
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THE INDIAN CANCER ATLAS Using pathology-based
data to obtain clues about geography of cancer
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Fig 8. Districtwise Microscopic Age Adjusted
Incidence Rates (MAAR) Per 100,000 Stomach (ICD
10 C16) Males Year 2001 - 2002
Imphal West (12.2)
Dimapur (10.0)
Senapati (8.7)
Tamenglong (9.1)
Lahul Spiti (15.1)
Churachandpur (19.2)
Kolasib (56.1)
East Sikkim (15.4)
North Sikkim (27.7)
Kohima (34.0)
Ukhrul (11.2)
Aizawl (47.0)
Champai (46.3)
Serchhip (70.2)
Saiha (23.0)
Lawngtlai (10.2)
Lunglei (25.3)
Mamit (53.4)
Thiruvallur (10.7)
Thrissur (12.6)
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Population -basedcancer registry Active
surveillance
Tehran
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KOREA National population-based cancer registry
network
Using the existing Korean Central Cancer
Registry a hospital based system providing
national level, but incomplete, data since 1980.
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THAILAND Cancer in Thailand, vol III based on
the established 5 Registries There are another
5-6 start-ups
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CHINA Survey of cancer registries nationwide

• Information from 48 PBCRs
• They cover 5.7 population
• of China

• To be published in
• Eur. J. Cancer Prevn.

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• Why do we need cancer registries
• Current situation in Asia
• Whats new
• The role of IACR

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International Association of Cancer Registries
Founded in 1966 Aims To improve quality of
data and comparability between registries
To disseminate information on the uses of
cancer registry data
Ottawa, 1992
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SUPPORT TO CANCER REGISTRIES

• International Standards
• Publications related to cancer registration
• Consultancy ( WHO regions)
• Training of staff
• Fellowships
• Computer software

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CANCER REGISTRATION PRINCIPLES AND METHODS
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Manual for Cancer Registry Personnel
Comparability and quality control in Cancer
Registration
Guidelines on Confidentiality in the Cancer
registry
ICD Conversion Programs for Cancer
International Classification of Childhood Cancer
1996
Histological Groups for Comparative Studies
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(No Transcript)
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IACR MEETINGS
1990 Hamburg, Germany 1991 Quito,
Ecuador 1992 Ottawa, Canada 1993 Bratislava,
Slovakia 1994 Bangalore, India 1995 Rio de
Janeiro, Brazil 1996 Edinburgh,
UK 1997 Abidjan, Ivory Coast 1998 Atlanta, USA
1999 Lisbon, Portugal 2000 Khon
Kaen, Thailand 2001 Havana, Cuba 2002
Tampere, Finland 2003 Honolulu,
Hawaii
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Beijing, China, 2004
THANK YOU. See you next year (and before that,
I hope!)